What happens in a family where one child is diagnosed with a disability like autism?

In primary school, I had a best friend who had two brothers and a sister, except the sister didn’t live with them any more. The term “autistic” was mentioned, but I had very little idea what that meant. All I knew was that there had been something wrong with her. She had never grown out of the “terrible twos”: her screaming and tantrums, her inability to communicate wants and needs, wore her (very kind and loving) parents down. She had been sent away to live in an institution, and my friend rarely spoke of her. I have a vague impression that the family visited her, but I can’t be sure. For the rest of us, she had ceased to exist as a person.

This was a time before the government policy of de-institutionalisation, of supporting children with disabilities to live in the community. In those days, the policy for autistic children was “out of sight, out of mind”.

But what would it have been like for my friend and her brothers if their sister had been kept at home? If the parents, in order to cope, had shaped every routine in the house around not triggering tantrums? If the “neuro-typical” – non-autistic – children had been asked to take second place – or not even asked, just relegated to that position? Would they have fantasised about what it would have been like to have grown up in a “normal” family? Maybe even been tempted to act out those fantasies?

This is the scenario explored in Jodi Picoult’s novel, House Rules. In the story, eighteen-year-old Jacob is the “boy” who has Asperger’s, a high-functioning form of autism which manifests as an inability to recognise and respond to social cues, as well as a lack of empathy and imagination. Jacob’s long-suffering and devoted mother Emma has made every sacrifice for her son, leaving Theo, Jacob’s fifteen-year-old brother, longing for a very different family. The boys’ estranged father, Henry, has long since abandoned them, and, when we finally get to meet him, he too displays some characteristic behaviour of autism.

A common feature of people with Asperger’s is a fixation on a particular area of interest, in Jacob’s case: forensic science. This fixation, in part, is the reason why the two boys find themselves embroiled in a dilemma concerning Jacob’s social skills therapist, Jess, a kind-hearted girl whom Jacob fears is being abused by her boyfriend.

In House Rules, Picoult once again weaves a compelling story, one that had me engaged from the start and wanting to stay up reading long into the night. At the same time, I found the story frustrating. From at least halfway through, I could see that the main conflict could be resolved with one good conversation. Ending the novel, I was wondering whether I’d been cheated as a reader, strung out unnecessarily by an unrealistic narrative; or whether the frustration resulted in part from Picoult’s use of irony. After all, the only reason I knew one good conversation would resolve things was because, as a reader, I was privy to Jacob’s point of view; the other characters – crucially, for the plot – were not. A feature of autism is an inability to communicate simply, just as frustration is one of the dominant emotions felt by those living with autism, as well as the people who interact with them. So maybe leaving the reader frustrated was intended? Or maybe not.

Whatever Picoult’s intention, House Rules is still a very good read.

~

Author: Jodi Picoult
Title: House Rules
Publisher: Allen & Unwin
Date: 2010
ISBN : 978 1 74237 365 2

I borrowed a copy from the library.